Estée KlarThe Joy of Autism

I was almost ill when I saw that book last week- I can’t believe what a slap in the face it is. One of my daughters had cancer, and it was by far the worst experience of our lives.

I’d emailed the Canadian Cancer society about it as well to suggest that they make a formal protest about it. I find it appalling on so many different levels.

I don’t judge books by their covers so I’ve added it to my TBR on goodreads. I’ll get it when the libraries release it into the ILLO system.

Comments like “I don’t care how tough it is” are why families are running away from the Neurodiversity movement. They can’t deal with it any longer and the parents aren’t getting the help they need.

We happen to be some of the lucky one’s…. and yes I have lots of opinions on what those that aren’t so lucky should or should not be doing. That’s simply a human reaction.

But I never, ever, ever judge… b/c I don’t live in their world.

S.

Sorry, Farmwife, but this is not the “reason why people are running away from the neurodiversity movement.” The reason why people “run away” is because they are infiltrated with ideas that life has to be perfect and therefore, we have to have the children who we are supposed to expect to have.

I have to strongly disagree with your comment here. Raising children is tough, period. This book is tweetering on the border of child-abuse. It is simply disgusted to suggest that having a child with cancer is easier than having a child with a disability. Disability is and has been part of the human condition forever. Cancer is terminal.

Struggle is a part of all of our lives. Some have a more difficult time of it, for sure. But this leaves no excuse for “wishing” one’s child had cancer. It’s an incredibly ignorant title and premise that leads to dangerous and desperate actions on the part of some parents who have autistic children.

Also, consider this: who do you think made up the title? I bet the publisher did. And why? To sell many books.

The idea of catastrophizing autism for the sake of selling products goes against every ethical grounds for supporting disabled and autistic people as valuable members of our society. It devalues and cheapens them, and in the end, threatens their very existence.

As far as “neurodiversity” goes. I find it amusing how the term has been adopted by those who refuse to accept disabled people in our society and is over-generalized in its use and ascription to me.

I believe that all people are valuable. Call me what you want. All people deserve to be here and deserve full access to society.

What a sick horrible man !!!

Well put.

Okay,
I bought the book and read it.
My daughter Deirdre, who is 14 and a brilliant child
with Autism, said, “Mom, don’t judge a book by it’s cover”..
I said, “I’m not, I am judging it by it’s content”.
I wasted 1 1/2 hours reading this book.
All I could think about the author was “Poor, poor
pitiful me”…a big, fat pity party.

Gorgeous kids though. I hope they NEVER read the
title of this book.

I had my eldest child undergoing chemo when my youngest was diagnosed with Autism. I think I may have an idea on both scores. At the time, I dealt better with the chemo than the Autism. Now, I’m so very grateful to have them with me. Cancer is tangible, so to speak, Autism isn’t.

“Tough it out”, is way too harsh.

Ont. parents still asked to give up custody of special needs kids: Ombudsman
Published: Wednesday, March 18, 2009 | 11:29 AM ET
Canadian Press NewsItem/NewsComponent/NewsLines/ByLine
TORONTO – Ontario’s ombudsman says parents of special needs children are still being asked to give up custody to get their kids treatment, despite government promises to stop the practice.

Ombudsman Andre Marin issued a special report in 2005 criticizing the government for forcing parents to relinquish custody so their severely disabled kids could be put into residential care.

The province eventually restored custody to parents of 63 children, but Marin says it’s happening again to at least another 19 families.

Marin calls it the most “morally repugnant” thing that he could possibly imagine a government doing.

Children’s Minister Deb Matthews says her officials are working with the ombudsman to make sure cases are resolved so parents do not have to give up custody of their kids.

Marin says he’s extremely disturbed by the actions of the Children’s Ministry, and will likely launch another special investigation into the custody-for-care problem.

“In between very nice, candy-coated statements by the government that this shouldn’t be happening and is not happening, we see it’s still happening,” Marin said in an interview.

What did they have the stupid birthday party for the child in the first place (Chapter 1–I read it on the website). Just another occasion for dad to whine about how bad things are and how the kids with autism manage to spoil everything. Makes me sick.

I have been reading these comments and your last one really makes me angry, I am a mother of an autistic child who is now eight years old, he is in the mild to moderate stage of it and believe me there is not a day that goes by that I wish and pray to God that he never had it, as to this day my son has not spoiled anything in our lives, he is bubbly and cheerful and he does everything a normal eight year old child does, there is days, when he has his moments, but as parent we all should learn how to deal with and to wish the worst disease i can possible think that is out there,on a child the man certaintly has lost a few screwballs. it’s hard on an adult , imagine a child. my son has been diagnosed with autism since he was in grade one, and he is in a normal grade 3 class with the erw by his side,and doing grade 2 and 3 work, and i praise him everyday for accomplishing something, and that is what the father should do insteadof complaining.

I am horrified that someone would abuse their child with writing about them like this. Reading the title brought me to tears. Cancer runs in my family on both sides (my mom and Dad’s side) and on one side of mu husbands. I have lost over 20 relatives in my short 29 years on this planet to that horrible disease cancer. Our 5 year old son Xander was formally diagnosed in April 2006, and while it was hard to hear, it just is part of who he is. It does not rob him of anything, he is just wired differently and so requires unique learning enviorments. There is nothing wrong with him, he is just Xan. He is now learning to talk and communicate with his 2 siblings and their friends, so I don’t think that his Austim is a bad thing, he just learns differently, his Autism won’t kill him. Cancer would. WHY would someone even think about giving this man any money for anything? He should not have his children, this is abuse!

I’m overwhelmed at the response to my book. I’m a Dad, doing everything he can to help his kids…everything. I wrote this book to help those I care about understand our struggle. I did not think it would be published, but I am sincerely humbled by the good it has done for so many over the past 5 months.

This isn’t a competition to see which kids are sicker, it’s about cutting through the confusion a letting people who do not understand, who are not engaged in the cause to see how sick how these children can be. To help everyone understand just how serious this epidemic is.

My kids are sick, not crazy, not afflicted with a hereditary condition. Tests prove it. They can recover and have begun to recover over the past year despite the lack of support, infrastrusture, awareness. As their health improves, their Autism disapates.

Several have said the Autism won’t kill. I continue to question that. The conditions that cause the Autistic symptoms are serious, critical, even potentially terminal as evidenced by my family and others. Even the leading Autism proponent bases her books on the fact that her child almost died several times.

I understand the title is alarming, it is not meant to be offensive, it is not meant to be marketing device. I…we, need people to understand the seriousness of this epidemic.

I do not seek pity, nor deserve it. My intent is to describe what life is like, to help people see the desperation, the hopelessnees, the perseverance, the hopefulness of overcoming Autism. This is a journey that we need to share.

I cannot begin to describe what this book has done for so many.

Please do read the book, share it with others you know, those who care will understand.

Take Care
Michael Alan

Michael,

Thank you for your response. I think it is worthy to discuss the seriousness of the title and its ramifications on thousands of autistic people — “severe” and not “severe” in terms of how society views them as sick.

From some first-hand experience, pathologizing a disability under the medical model has done perhaps greater harm than is discussed overall. It’s not that people do not want assistance, it’s just that autistic people are not “sick.” Autistic people do not “suffer” any more or less from being autistic than neurotypical individuals “suffer” from an adjunct illness or loss.

The point of fact is there is no proof that there is any such “epidemic.” You have not fully completed your research here. Begin typing “there is no autism epidemic” in google and see what you come up with. You might want to start by reading Kathleen Seidel’s excellent research at http://www.neurodiversity.com, or leftbrain/rightbrain blog. D’oC blog, and you’ll end up finding more. You will end up bumping into scientists like Dr. Roy Grinker, Dr. Morton Ann Gernsbacher and Dr. Eric Fombonne. You will find more.

And once you begin understanding the difficulty and the history of disability and how disabled individuals have been mistreated in and by society –because they are lesser valued as they are deemed “sick” or “not normal” and “better off with cancer” instead of autism, well, then you may begin to understand the complex pain the title of your book has caused so many disabled people.

I think we all need to take responsibility for our words and actions. You may have a point of view, but it’s certainly better stated if we all know you understand the other point of view clearly.

I did buy the book and read the book. If anyone wants to borrow it, you may. It is quite an easy read and took very little time.
The back cover states..
“I Wish My Kids Had Cancer is a father’s gripping, real glimpse of his family’s struggle to survive with two children with Autism. The book intimately, honestly, and powerfully, addresses the emotional, social, financial, political and medical aspects of a family fighting for their very existence.”

There is also a song you can download written by Sara Hickman…I emailed her and she emailed me back…

To the author of this book…
I am also the mother of more than one child with Autism. It saddens me when parent’s feel it would be easier for their children to have cancer than autism. I know of mother’s and father’s who have lost their children to cancer and other life-threatening diseases. There is no comparison with Autism.

And, if you are using Jenny McCarthy as the leading proponent of Autism (I got a chuckle out of that one), you must know her son did not almost die in front of her from autism, but from a seizure.

My husband and myself have 5 children with Autism. We do not blame them for anything except bringing much more joy into our lives than we would ever have thought possible.

You have a beautiful family.
I hope they never feel as badly as I do by the title of your book.

Typical cancer survival is perhaps 5 years. It varies depending on the type of cancer. Typical autism survival is probably 60 to 70 years in the first world, if the person is not institutionalized.

The comparison is not only insulting, but it’s also illogical.

Ok Michael, “those who care will understand.” Nice. So those of us who disagree don’t care. Is that what you mean?

How about some evidence for your claims that autism is not genetic and that present numbers constitute an epidemic. If it is an illness what causes it? What is curing it?

I am an autism dad. My book was published 10 years ago. It took me a while to realize that being published did not mean you were right. It meant you were published. I am on the same publisher’s list (Jessica Kingsley) as some very bad books about autism, along with some very good ones. So being an author is no big deal. Being able to back up your arguments here in this discussion on Estee’s blog is a big deal. So give us some substance.

All I hear is crickets…..

Hi Estee,
I know this is an older post and hope you see it (Hi! How are you?!?I’ll also send you an email.) I just wanted to let you know that I went on amazon to look at this book. My partner, Tom, obsessed with Amazon and has shown me the delights of other customers’ comments. I’ve gone through the comments in conjuction with this novel. I can’t say I’ve read the book as the reactions are enough for me. I don’t even know how to describe the way I feel when I read an exchange between one ‘reader’, Kenneth and the author, Michael. One of the last comments is from a woman who talks about her child suffering from both cancer and asberger’s. I think it’s very cowardly for the author to give the ‘PR’ answer (trust me, I know all about it…) and not respond directly to the critics. Sad, just so sad I had to comment. This person needs to seek some therapy and realize the reason as to why he’s written something like this. The title is shocking enough. Really, just very disturbing.
x

That’s really a horrible title. I had cancer when I was a child. I don’t remember much about it, but it wasn’t easy on must of my family and I was sick often from the chemo and my hand still can’t form a fist and is smaller than the right.
Still though, that title is super extremely harsh. Cancer is a horrible, deeply depressing deadly disease….

Double posting, but I read the first chapter of the book and thought of With the Light which is a Japanese manga about autism and probably one of the best things about autism I’ve read besides blogs.
It’s about how they learned to cope with Hikaru’s autism. They would have warned the boy in advanced that a party was going to take place and what to expect, and they would have kept the noise at a minimum and provided a safe place for the child to go to, and it was a fiction book. So I found myself feeling bad for the kid in the first chapter of that awfully titled book (Dude couldn’t have just called it Coping with Autism or something like that? I’m still annoyed about that title and its insensitivity) because the poor lad was probably overwhelmed by the crowds and the noise.
I don’t think it’s healthy to think too negatively about autism because when that happens the perspective of autistic people is sort of tossed aside in favour of pity and depressing stories which isn’t totally helpful for anyone since even kids who don’t have autism can be overwhelmed and overloaded and throw tantrums from frustration…….

The title is simpally dredful! I can’t believe someone could be so insensitive to a child with a disability. We all know that coping with Autism, and some of the problem that can come with it is no fun, but I don’t understand how someone claiming to love their child could ever say such a thing, even sarcastically. I know many people living with autism personally, and they are all some of the sweetest most wonderful people you could hope to meet.

Hi i’am a child health student nurse and Iam currently writing an essay about autism, I have also had placements working with people with autism and I have to say I found it extremely fullfilling. I have not read this book and I am in two minds on whether or not I should. I am outraged by the title as I have family members that have had cnacer when i was very young and it was extremely dificult. I also have cousins that have aspergers. I do not understand how this man could say that he would prefer his children to have cancer. As stated previously it is not autism that can lead to death but perhaps other health problems e.g epilepsy that can contribute to it. Everyone is individual and will experience different things but to expect everyone to feel the same way as the author is totally unrealistitic. I hope that he did not think that his book would not cause controversy when sush a title is chosen.

This is just sicking of someone that thier wish their child has cancer!! I wonder how he wnat to put in the parent’s shones and how go through trereatments of their child and painfuly wachting the children fighting for their lives or painfuly wachting their children lost the the battle of cancer. He sould be blessed that these children DID NOT go the horrible cancer. This guy ought to be ahamed of himself!!!

Also, he sould be blessed that NONE of his these children DID NOT have a horrible cancer. What a ungreatfull, selfish, brat, he is.